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Terry's Gears

Terry and Cindie Beans

Motor skills and thoughts-the big disconnect of your total being. I know you probably have heard the saying, "Sticks and stones will break your bones, but words will never hurt you." To a great extent this is true, but having a stroke on any level is a devastating event in one's life that by no means is just a little obstacle to overcome, or learn to accept, or for that matter learn to live with.

When you are unaware of the signs, it seems to come out of the blue, like a shark lurking in the ocean depths for its prey. How can this happen to me, or better yet, why? For one reason or another you keep beating yourself up over things that, as times goes on, you suddenly realize you have little or no control over what has happened to you. Trying your hardest to rationalize always leads you down a one-way street to a dead end. Here's how it began for me.

Almost a year and a half ago now, every night for a week I was abruptly awakened out of a deep sleep with a hammer-like splitting pain in the center of my head. First mistake, I thought it was the flu. Long story short, by week's end I experienced a life-changing event... stroke/seizure. My blood pressure was 234 over 114. However, lucky for me, my wife got me to the hospital before it actually occurred. I don't remember much of the first week, but a month later I was sent home.

This in itself was really scary for me, not having the protection of the hospital anymore. But it was a really good feeling when I saw my home again, because I didn't think I'd have that chance again. The tears ran down my face like a faucet was turned on. It took me awhile to calm down and actually realize I was home once more. Having one paralyzed leg and a speech problem on my up and down roller coaster ride, little did I know what was just about to begin-not just for myself, but for my wife also, who all of a sudden was playing a big role as caregiver. The challenges ahead for both of us were now in first gear and on a steady up-hill climb, with the top nowhere in sight, or even knowing if there was a top. Just a flat-out feeling of hopelessness, sometimes not sure if there was a second gear to be found.

Here I am once more, and it seems to me that I have found that second gear. For awhile my depression seemed to be getting the best of me. In addition, I was starting to really get annoyed, and sometimes just flat-out mad, when something I was doing would go wrong. Even the smallest little thing going bad would set me off. I caught myself a few times having an object in my hands, like a broom, and slamming it to the ground over something I viewed as a major catastrophe, and it really did seem like that. If my wife Cindie were around, I would yell at her when she was only trying to help. I felt mad at everything in general when things went wrong. Not that I ever would, but I felt if someone were close enough, and I could grab them, I'd punch out their lights, as the saying goes.

By the way, it is now 4:11 a.m. and I just woke up out of a sound sleep with these thoughts on my mind. So I had to get up and get them on paper in case I would forget later on, which I thought is a possibility because lately I've been forgetting things a lot more than I can think of, but on that subject, that's probably another 6,000 words. Where does it end? Things just keep popping up in my head, sometimes I think of myself as John Boy Walton. Getting back on track about second gear?

Second gear was sort of, or I mean somewhat of a personal accomplishment to me. Not far from where we live is a real steep hill, not long in distance, maybe a hundred yards or so, but the incline is really quite impressive. Last summer I set a goal for myself that by the end of October I would ascend to the top, just me and my wheelchair. Turned out fall, winter and spring came to pass and I never made my attempt, thinking it's quite possible I would fail, and I didn't want a letdown. To me it was a big deal. Well, anyway, here it is a whole year later, and last night, 7/26/05 my wife and I went together around the neighborhood, just to get out for a little exercise, and on the way stopping to socialize with some of our neighbors on the next street behind where we live. After a short period of time we resumed our pace, and went on. Then, after about 10 minutes, there it was, the hill on Watson Avenue. For some reason I said to myself, "this is it," and I told Cindie I have to try this thing now because for me if I didn't maybe, just maybe I never would. I asked Cindie to wait at the stop sign at the base of the hill. I pointed myself up the hill and in a few seconds began the climb. About half way up it really gets steep, like the pitch on the roof of a house. Never stopping when it was getting rough, I leaned as far forward as I could, so I wouldn't flip over, and kept my sights clearly at the cross road atop the hill. I started counting to myself with each new revolution of the wheels, as my hands became clinched tighter and tighter with the push of the rims with each contact. I did slow to what probably looked like defeat was approaching, but never lost forward motion, not for a second. Then, in a few short minutes, with sweat running and dripping off my nose, I passed the crest of the hill. I just had to throw my arms over my head and just wiggle all over. What a feeling, I made it. I felt inside like I had just finished the triathlon in Hawaii, or Rocky Balboa on the top step of the Art Museum. Actually for me it was even better, if that's possible. Tears of joy ran down my face and mixed in with all of the sweat.

After a few seconds I started the descent, sliding back and forth, left to right in skids to break my speed till I reached the bottom. Cindie greeted me with a really big hug-what a night for me. Almost like magic, an instant rush of hopelessness turned off like pulling the plug on the electric chair before it had time to fry your being and soul. Cindie told me that when I started leaning forward she said that she asked Mom, my mother who had passed away in January of this year, to help me out in accomplishing my goal. Looking back now I know for a fact exactly when, because I actually did get a burst of energy that took me to the top. Whether true or not, I want to believe it was.

For my next goal I wish for my outlook to improve and not get mad over the little things that go wrong, or I can't do. So far, this new journey of my life, I have to admit, has really been hard and it looks like I have a lot to learn about the way I see things now as opposed to how I did before I got sick. It's kind of like I was starting all over again on January 15, 2004 instead of May of 1949.

I'm going to put my thoughts at rest now for awhile, and continue later when I'm trying to reach third gear. Whatever that might be, hopefully it will be less frustrating, and easier for me to come to terms with. No matter what tomorrow brings, it's just that, a guess. There is no preparing for something you don't know; only doing the best you can when you do know.

For one reason or another something important to me, and I hope the same for those who I am trying my best to help, is volunteering at the hospital where I was a patient almost two years ago. I help out in the rehab area doing whatever I can to help make it easier for other people, staff and patients. It's actually one of the highlights of my week, for that one day -a few hours to help those who helped me when I needed it.

It really makes a difference for me to have the opportunity to be a part of the volunteer program. Whenever by a word or comment I produce a smile on a patient's face, my day has been all worthwhile. I know myself how much everything you do soon after a stroke seems just hopeless and how really lost you feel, and believing there are no better days ahead. That's why whenever I can get a smile out of someone, I feel I'm doing something to help make a difference for them, if only for a short time each week, because I'm pretty sure if they go home with a smile, they'll be okay.

The entire process of getting your life back in some sort of order and contentment, is really one big struggle-up, down, up, down, on and on. For myself, I'm still on that rollercoaster. When it stops, I don't know, but I know if I take off my seat belt, I'll fly off, and that probably would be the end. It's definitely a matter of sitting tight and hanging on till the coaster stops, there's just no other way.

On a more positive note, my wife and I go to a support group once a month, which is really good. I know for sure, just after a few short months of attending, we are not alone at all when it comes to everyday struggles and obstacles that come up. I was really surprised to hear how much in common everyone has concerning problems in dealing with what used to be simple things of everyday life. Knowing I'm not alone in this in itself is a big help. I think the big issue for me is getting stuck, or stalemated, and just settling for things as they are, which is a scary thought. Almost every night I think to myself "tomorrow I'll wake up from this nightmare." The good thing I guess is actually waking up to see the day, even if there are some bumps and lumps.

I think now I have pretty much given my overview on how I see and feel about life up to where I am now, and the most I can hope for is that anyone who has had a stroke in the past who gets a chance to read this, might in some small way help them see things for what they are, and to know for 100% they are not alone, and definitely not misunderstood. Keep climbing that hill, the top is within reach when you set your sights on one goal at a time.